Caregivers helping caregivers

Surviving the Grief

This article is mostly for those who’ve lost a loved one and are having difficulty moving forward. At the time of this post, it’s been 3 months since my husband died from Lewy Body Dementia and overall, I’m doing very well. I’ve been asked many times how I’m holding up as well as I am and as usual, those sorts of questions make me stop and think. I’m not totally sure why I smile more than cry, but I thought I’d share my survival plan with those struggling with the loss of a loved one. And, yes, I developed a plan after he passed away.

My mental health is too important to leave something this difficult to chance.

First, I’m a very goal oriented person. It’s natural for me to set goals and work toward them in all aspects of my life. Having goals keeps me focused on the future instead of the past. I often think of the saying, “Quit looking in the review mirror. You’re not going that way.”

So how did I apply that philosophy to my grief?
My husband died on November 13, 2016. Just a few weeks before Thanksgiving. It’s never easy losing someone you love, but having it hit just before the holidays can be brutal. Add to that the beginning of winter (seasonal depression, anyone?) and there’s the potential for a total collapse. Knowing that, I set a major goal for myself with smaller goals to help me achieve that Big One. My large goal was pretty simple…

Survival

I was determined to survive the loss of my life partner. I have children, grandchildren and an 82 year-old mother who love and need me. Giving up is not an option. Surviving this would require focusing on two different aspects of my life: my physical health and my emotional health.

The first thing I did was allow myself time to rest and heal. The last two months of his life were exhausting both mentally and physically for our entire family. I gave myself until the first of the New Year (about 6 weeks) to rest. I had to take care of the legal issues that arise when your spouse dies, but I gave myself a pass for all other things. There would be no cleaning out closets or cabinets. My body needed a break. In order to help with the stress, I began walking in the mornings, but I didn’t push it. I walked 3-4 times a week and usually only a mile. The bulk of the time, I rested, watched TV, read, and planned a future for the new me.

To cope with the holidays, I altered the way I usually celebrated. I spent Thanksgiving out of town with my daughter and her family in their new home. On Christmas Eve, my mother spent the night in my apartment. The next morning, we passed gifts and I fixed Christmas dinner for just the two of us. We finished the day watching movies together. These were all different for me as far as celebrating the holidays. As a result, they kept me from focusing on the fact my husband wasn’t there. Altering the way we celebrated helped quite a bit.

During my 6 weeks of rest, I made a list of things I enjoyed or was interested in trying. I asked myself, “If I had no one to worry about but me, what would I do with my time?” Because for the first time in my life, I wasn’t taking care of children, or a husband. I really did have the time to pursue my interests. This was new for me and took a while for me to truly grasp that concept.

My Joy List included:
Traveling, hiking, fishing, writing, reading, star gazing, playing guitar again, learning the violin, learning to draw, and photography. This list would be the focus of my emotional survival. Your list will most likely be entirely different. It might include things like getting a pet, putting in a new garden, or rebuilding a classic car. What’s on the list isn’t important as long as they are things that bring you happiness.

When January came around, I kicked my new goals into gear.

Physically, I wanted to increase my fitness walking to between 3 and 4 miles per morning by March. Being winter, this required walking inside our facility (I live in a retirement community), but I wanted to be able to hike by summer and this 60 year-old body needed some fine tuning. That also meant eating healthier. It’s easy to let those things slide when you’re in a caregiving situation. It was time to take care of me for a change.

As for my emotional well-being, that’s where my Joy List came in. Many of the items on that list revolved around traveling and camping. I had traveled my entire life, but we had to sell our RV when my husband became ill. I missed traveling a great deal, and during the last couple of years of his life, I decided if I survived his illness, I was going to camp again. So, I bought a used RV after he passed away (more can be seen on that here) and then joined a travel group for single women who like to camp but don’t want to go alone. It’s called Sisters on the Fly, and there are over 6,000 members! Each state has a chapter and there are events planned throughout the year, sorted by region. Early in January, I reserved spots for three different camping events. There are several events scheduled each weekend across the country and one of the toughest things I encountered was narrowing my choices down to a reasonable number. I wanted to attend all of them! The first one I chose was in Gettysburg in May and I’m extremely excited to join in the fun.

The key to that sentence is: “I’m extremely excited.”

That doesn’t mean I’m not grieving for my husband. I still have nights when I feel as though my heart has been ripped from my chest. I still break down into tears periodically, but when those moments happen, I force myself to think about my plans and the future. I’ll confess, sometimes it’s tougher than others. But the main point is that I have made my well-being a priority now. For eight years, my number one goal was to keep my husband as content and comfortable as I possibly could. It’s my turn now and I intend to tackle my new goals with as much vigor as I did my husband’s care.

So what are some tips I can share for how I’m surviving the loss of my husband after almost 40 years of marriage and 8 years of caregiving?

Get physical. Walk, swim, bike…do whatever you can to move, not only for your physical well-being, but to reduce stress. Exercise releases endorphins and endorphins make you feel better (and they’re free.) It’s also important to get doctor’s checkups you might have missed while tending to your caregiving duties.Make a list of things you enjoy then do them. Now is your chance to focus on what YOU want and not on what everyone else wants from you. Whether that means travel or simply getting a pet to keep you company, it’s time to spoil yourself. At least once a day, look in the mirror and say, “My life is important too.”Get out and interact with people. Sitting home will only make the depression worse. Join a group of some sort-church, volunteer somewhere, go to the Y, support group,…even if it’s an internet group, just INTERACT with other people.Allow yourself to grieve, but don’t dwell in that dark place. Grief will begin feeding on itself if you’re not careful. Make yourself laugh at least once a day. I have a Pinterest board with things that make me laugh. (Youtube videos of babies laughing will do it every time) It’s hard to be sad when you’re laughing.Accept that being happy does not mean that you didn’t love your spouse. It means you’re not going to allow their death to erase all the joy you’d shared with them through the years. Keep the joy in your life, look for it, embrace it, and actively seek it. There is no better way to honor their memory than to smile when you think of them.

Hugs to you all. There is life after caregiving, but you have to reach out for it. It will not come knocking on your door.

*Feel free to share this post. If you’d like to follow this blog (it’s free) click on the follow button on the right side of this page and you’ll receive an email whenever there’s a new post. You can unfollow any time you wish.
*If you’d like to see past posts, go to the top of this page and click the “home” button and scroll down, or go to the “categories” on the right side of the page.

*I’m also a published fiction author. If you want to check out my books, you can find out more about them here.

Thank you, Jean. I know this article looks at my personal journey and not everyone is the same, but I hope there’s something in this article that will help others when the time comes. Good luck to you.

Dear Lisa, Your suggestions for survival are right on. My husband passed 3 yrs ago from LBD. Coincidentally, his birthday was Jan. 31st. But I’d like to add to not forget to see your Physician and catch up on those tests like colonoscopies, etc. that we have not been able to attend to over the last few yrs. I finally got around to this and was diagnosed with colon cancer. Luckily it was caught early and was curable. The empty house was especially hard for me so now I have a little dog who has helped immensely. Just some suggestions. Keep up the good works!

Good suggestions, Pam! I think I’ll alter this post to add getting checkups with the section on taking care of the our physical health. I’m so glad you got a a fur baby! They can help with the loneliness so much. Blessings.

My spouse if still here with me so my grief is limited to the anticipatory grief. Thank you for your article. I am also working on the walking. Signed up for a 100 miles in 100 days challenge. Hope to work on healthy eating (you are right it gets pushed to the side as a caregiver). Glad to hear about Sisters on the Fly. Maybe I will head up to meet you at Gettysburg – its just over an hour away.
Julie

Barbara, there’s no easy way through any of this. You’ve done everything you can to take care of your husband, but soon you’re going to have to focus on taking care of you too. It’s okay to think about Life After Lewy. In many ways, I think it’s nature’s way of helping us prepare for the inevitable. Good luck to you.